While Suze Bryant has transverse myelitis her article “Accepting I Can No Longer Live the Life I Did Before Illness” on The Mighty can help those diagnosed with multiple system atrophy. Being diagnosed with a serious, life-altering rare disease is not easy regardless of the disorder. As a rare disease community, we can learn from each other’s experiences and apply certain approaches to improve day-to-day living.
While Suze desperately wanted to continue living as she did prior to her diagnosis, she eventually realized that accepting her new normal made it easier to be happier as she moved forward.
Read the below excerpt from her story:
“It took me a long time to realize it, but I simply couldn’t. It just wasn’t possible. I could no longer do everything I had done before, at least not without leaving me sick and desperately sad that I could never reach the bar I had set myself. But that left me in an ever-bigger quandary: I didn’t want to give up. I mean, I was being told to “fight it” – both by myself and by others – but eventually I realized that the only thing I was fighting, as I grappled to fit into this mould of my old life, was myself.
My stubbornness and dogged determination to live as I had previously done was not a fight against my illness: it was a fight against myself. And it was one I was losing.
And yet I carried on with the battle, despite knowing it was not only futile, but damaging. It was harming my body, my mind, my relationships. Still, I carried on. I did so because I felt that accepting my situation, and adapting to it, was giving up. That, by changing my life to suit my illness, I was letting it win. But, in reality, it was engaging in this constant, futile battle that was making me lose time and time again.
So, I changed my mindset: instead of fighting for my old life, I began to fight for my best life. And the only way I could do that was by accepting how things were for me in the present, by grasping the resources I had available to me in that moment, by accepting that things had changed. By accepting that I had changed.
It was only when I stopped fighting to force myself into a glove that no longer fit – only when I accepted that to live my best life I had to live it differently – that a way forward began to emerge. For me, acceptance wasn’t giving in: it was the golden ticket to my future. Acceptance meant adapting my life to allow me to get the most out of it, to give me the freedom to be the person I so desperately wanted to be.
Acceptance isn’t the same as giving up: it’s accepting how things are, rather than fighting for how things used to be.
For me, acceptance is the superpower that allows me to embrace the life ahead of me: it is the key to a life that can be well-lived.”
Where are you in the journey of accepting life with multiple system atrophy?
Have you followed a similar path as Suze?
Even though you have MSA what daily things can you do to ensure that your remaining years are well-lived?
